Carlos Horn

Welcome to staying connected, a podcast where I talk to people about their stories with feds, mar fan, louise s, and related vascular and aortic connective tissue condition The views, information and opinions in this podcast are those of the individuals involved the information presented does not constitute medical or other professional advice or services. For Welcome back to a new season of staying connected. This season, you'll hear from 7 people in

our community about their stories with vets. Mar and Lo s, including 2 people who have a variant of uncertain significance or Vu us on call 3A1. The gene associated with beds. Today, we're gonna kick off the season by talking with Carlos Horn who is diagnosed with vets in 20 23. Before we get into the interview, I am very happy to share a new way to support the show. Merch. Saying connected now has merch.

Including tote bags and t shirts and several different designs, which you can use to share your story or raise awareness about these conditions out and about, There will be a link to the store in the episode show notes and I expect more designs will be added as time goes on. If you like this show and you wanna help communities raise awareness of events, Marvin and Lo seats. You can

also still join the Patreon. It's a fantastic way our support the podcast and the show wouldn't be possible without the continued support of my subscribers there. If you've already been supporting the show there, thank you. To Let's get into the interview. Thanks so much for joining the podcast to share your story with vascular Ehlers, Danlos syndrome or beds. Do you wanna introduce yourself to people who don't know you already? Sure. My name is Carlos.

I'm 46. I was recently diagnosed with beds, vascular Ehlers danlos syndrome, and I'm from I was born some originally from Los Angeles, but I was lived in Arizona a lot of years. And you said that you were diagnosed recently, Like, how recently was this diagnosis? It was in the early part of last year, so 20 23. So how did this diagnosis come about for you at, like, you know, mid forties? Like, how how did this happen? So interesting thing. I I had a... I guess,

The stroke when I was, what, 38. So was around 2016 or 17. So roughly around 38 and went to the hospital, it wasn't a major stroke, but it was a stroke, you know, I was... Impair impair from any type of movement or anything for a few seconds, so it was pretty scary. But I've never experienced it, so I didn't think much of it because I was able to kind of catch my breath, catch myself, sit back down and kind of shake everything off after a

few minutes and resting 15 20 minutes. So didn't think much of it, but I was having some other type of complications as far as my health goes, so I went to see the doctor about a week later and mentioned it, and we started running some, Well, he's he requested a bunch of... Away mris eyes and cat scans because of the stroke in my head and then... And saw it was a stroke, but again, he mentioned that it was it was small. He didn't really think nothing of it

either. He just said possibly because of the scarring and it wasn't... There wasn't a major signs of it. But when I was also complaining about my other issues, I think it was stomach issues at that time. He had requested a full body scan and, forgot it at that time where those was cat scan or my both or whatever it was. But, later on, you had come back and mentioned that I had the aneurysms and also blood clots. So

We dressed the blood clots. You put me on black thinner, but he just said let's progress. Let's keep progress on and let's keep... Hopefully it's progresses and the blood clots go away, take care of themselves and unless just keep an eye on you. But we didn't really get into any details, and and, you know, it it wasn't it it was more of, like, I guess because I was health I was healthy, and they didn't see much or a need of to check into it much further. We kinda put it on the back burner,

just let's just monitor you. Right? I moved to Arizona and mike, insurance changed. So I had a couple different doctors between that point... At between that time period of me moving back to California, And when I moved back to California, you know, I... Again, I was healthy. So I was always I was into the gym, I was I in crossfit. I was hitting hard pretty good at that time for about a year straight, going 4 or 5 days a week. I was watching my nutrition. So I was...

To myself, I I was doing At the same time. I was I was healthy. I was like, okay. I'm on top of, I feel young. I feel good. Yeah. And all of a sudden, I I didn't at 1 time. I just came to me. I I didn't feel good at all, like, terrible, and I had no reason why I didn't know why I was feeling bad. I just was, and it was feeling really bad. Some, like, a bad hangover. And I was going on for a couple of days. My sister suggests to go to the hospital or go tell my doctor checked

for the blood clots. She's a nurse. So she said ask about the gl clots and check into all that stuff. And I ended up calling and they sent me to urgent care instead. So went into urgent care, and my blood pressure's is really high, and, I mean, extremely high. And, you know, before that, I had a a couple of blood pressure problems. I mean, it wasn't...

Major wasn't where they were like, oh, well, you know, we need to put you on blood pressure measures it's more like you know, loose weight, or, you know if you keep up the weight and keep up the high blood pressure. We may need to chu is, but I lost the weight. So we didn't, see no need and also, a lot of times, they would take my blood pressure and then wait and then take it again, it would be down. And so we kinda just

blew it off. Right? Yeah. So I go to the doctor at that point, urgent care and They're just feeling bad. So basically, at that point, I think at that time, I was working with the nurse, and she had mentioned that, okay. She gave me some aspirin. She's like, well, we may need to put you on blood pressure medicines, but let's monitor it. Let's just see if it's a 1 time. Go home, make sure you rest.

And then if it's high again, come back in, and then we'll see Bug you into the doc and see if we can get you on some blood pressure medicine because we can see that, you know, obviously, losing weights it's not gonna fix it because you're not obese. I mean, I was a little overweight, But, I mean, nothing to the point where would they have to worry about it. The next day, it was literally the next day I just felt, like, terrible.

It's hard to explain it. If if you have really, really hard blood pressure, you would know it and understand it, but it's like, you feel really out of energy tired, exhausted. Like, you really don't wanna get out of bed then kind of, like, not too bad of a hangover, but really, like, light handed. I wanna say, maybe, I don't know it's hard it's stuff to explain the the feeling physically. But I felt just bad and I I

just... Told my sister, you know, I'm gonna go, and I called him... I called the Kaiser and the nurse and the nurse come into immediately. So I went into the. And That was the doctor that... So thank him. I I thank him and I appreciate he was there. That was the doctor that kind of opened my eyes and and said, you know, the he came in with my chart and said immediately off the bat. Before we even did anything. He's well, you had a stroke.

He should be on aspirin and you should be on high blood pressure medicine, you we should be monitoring. You should be on a preventive maintenance plan. And whatnot. And I'm like, okay, and maybe I should be, but, you know, I'm not a doctor. You know. How much time was between? When those... Because you you mentioned these aneurysms that they found before.

And then you moved Right to Arizona, And then eventually, you moved back to California, and that takes us to where, you know, you're having this. Experience that you're talking about now and you're in the hospital, and this doctor's like, whoa, hey, there's a stroke in your chart. There's aneurysms in your chart, like, how much time is between these events. So that all... That diagnosis and what I

was working with... My doctor at that time was in 2017, between 2017 and 2018, So roughly around 4 and a half almost 5 years. Yeah. So continue then. I just wanted to get a... I wanted to get a better understanding of that time. That time span, and then we'll we'll talk more about the aneurysms. Yes. So, at that point, he said he want me... He... He put me on... He came he come in. He wants me to rest.

They put me on blood pressure medicine, and he said, on An aspirin every day, 1 aspirin a day in your blood pressure medicine, keep on that, and let's bring you in for a, checkup up you know, in a couple of weeks. He was I want you to follow up with your primary care because we need to look into this a little further.

So I says, okay, You know, he was give it a couple of weeks, So a couple of weeks went by, but, you know, is the first time I ever taken blood pressure medicine, so I kind of went through the motions of that. And when you take blood pressure medicines, some don't react well with you. So, you know, the first 1 was I was just having migraine headaches, I never had in my life the worse. Like the absolute worst.

So we kinda played around with different... A couple of different medicines, couple different dosages until we got this 1. And finally, I can take this 1 and function, without issues. And that went on for a few weeks until I started feeling better. So I finally ended up taking that medicine and kind of adapting to it, acc acclimated to everything. And then I followed up with my primary, and we went in and We had a couple visits, and we talked about what happened, and they were going over

my charts. And at that point, it was, like, okay. My primary says, let's go ahead and he was... It they said it's been a while since we've had your scans. Let's go ahead and do the complete body scan again that you had 5 years ago. Wanna see what's going on with that, because we do see that she's had a bunch of aneurysms, No one's ever really addressed that. So I do the body scans.

And we come back. And a couple of doctors, different doctors, primaries I've had in that time period because at times, you can't always see the same doctor right in the office. So they were collaborating, I guess or whatnot. So I would go see the other 1, and they came to consensus of we're gonna send you to a specialist. So they sent me to a vascular specialist and the vascular specialist in Riverside. She really knows her stuff. She's really good to pleasant to work with.

And really thorough, is she kept she asked for as as many... As much as she could as far as ultrasound of my stomach cat scans, Mri. It be as much as she could without putting me in in more danger right because of all the radiation and whatnot. So she wanted to limit the the type of rays and and how many I got But she got as much as she could and much information she comes back and says, you know, I see there's stuff going on, but And I have... She goes... It's like AAA shot

on to left field. I wanna send you to a genetic specialist because I wanna have you scan or I want to have you tested for or for something. And I don't... You know, at that point, I'm I'm, like, I'm listening, but I'm I'm zoning some of the stuff out just because of fear I guess, or what it may be? Maybe some type of fear, So I know something's wrong with me, but I'm not comprehend handing of the details of it, and I'm not wanting to soak in what she's telling me. I'm just hearing the

direction of, like, okay. I'll need to go to the stop and get tested or whatnot. So I'm not sure if she actually ex... Blame to me and what she was gonna test me for exactly. And the details of it because I had no clue of of beds, and I've never heard of it before or anything. So she just told me she was gonna send it to me and what she said after that was kind of 1 at the other.

So basically, at that point, it's wait for the genetic specialist office to call me, set up an appointment and go see them. This was probably probably March, I believe or April. I think it was April. I actually got tested and then May when they told me. So I I waited a couple of weeks. They call me, and I I get in, I get an appointment scheduled and I go to the genetic specialist in Kaiser. And we sit down and we talk, and he tells me, and he explains to me again on what

it is. He he didn't actually tell me that, like, the medical terms and the medical names and the references of what it was he was testing me for. He just said there was vascular diseases that a couple of them that he wanted me to test for. That might be an issue. That might be the cause of this, without getting into too much detail you know, he mentioned that because I I looked out... I was so

healthy. I looked healthy previously that I didn't show signs of or symptoms of of of that genetic disease. But, you know, it's it's funny. I look at it now, and I think you and I had this conversation before and And when you had sent it mentioned skin breaking, I I think back now and I was like, you know when I was said, and I told you about the bee being allergic the chalk, the chalk issue when I was in school.

Well when I reached to touch chalk, I maybe been in for a second grade, and we had chalkboard, and we'd ride on the chalkboard. I'd go home a couple digging get my skin would break. Yeah. My fingertips, and my my mom would actually have to put cream on my hands and gloves. But no. There was no knowledge of that. You know, but that's what used to happen. So he goes, I'm gonna test you for it for some stuff, and we're gonna come back. And and and I asked him message as,

well, what is... Do you guys test for? He goes, well we test for a lot of... They're they're gonna test you for a lot of stuff. So what's gonna happen is if you come up and you're alerted for... A specific gene, it'll show positive. Right? And I says, okay. So I got that call a couple of weeks later, and Yeah. Yeah It was him. So he called me in 1 of to talked about my results. I go into the office, and he starts telling me that I was positive for this And again, I had no knowledge of it.

You know, I I didn't know what it was. I didn't know any details about it. Never heard of it. So I I just... I I stood in silence really, I didn't know how to, digested. I digest the information. What did he tell you about it? You know, he he he was pretty empathetic. You know, he was it was he was... He broke the news well. I mean, I can say, kept it, you know, as far as you know, I know this isn't what you wanna hear. I'm sorry, but, you know, this

is is something that's... It's a vascular issue, and he started saying, he he told me a little bit about it. As far as, you know, it... Basically what it does is it makes your bay... Your your veins or arteries weak, You know, didn't go into much details about it. And the name of it. And then he told me, you know, you need to change your lifestyle to accommodate this, and you need to make sure you're keeping on top of it. And I'm like, what do you mean change

my lifestyle. You know, he goes was, like, you immediately gotta stop the crossfit. You can't do that anymore. He you can't way live. And I'm like, you talking about. So, basically, I I can't live in normal life, and, you know, he told me this way you've been living a normal life. But you gotta make a few adjustments to as you're gonna get older. And at that point, that's, you know, when the grief... That's when it kinda started sinking in.

You know, luckily enough my vascular surgeon called me an after hey got tested it and they found out. And she gave me some more details about about beds and whatnot and about what it is and and you know, what to do and and as far as what not to do. But the thing is I still felt like I knew nothing, I... I knew absolutely nothing about it. It's like, yeah. You're telling me I can't wait left. Yeah. You're telling me I can't crossfit. You're telling me. I can't go and jog anymore.

Or I can jog, it has to be very, very lightly, and it can be not, you know, no marathons or anything like that. So you're basically taking everything I wanna do, and I can't do it why? Why can't I I because my orders are weak. So what? Okay? What's gonna happen? You know, I I didn't know the details about it. I just knew that that's what... The way it was. How did that... What did that feel? Like, how did you

move forward with that? Because... I mean, like you point out, you had been doing crossfit. You were active, You were weight lifting. I mean, even years before when you were diagnosed with these aneurysms and then had the stroke or the mini stroke. Like, You know, at that time, they were just... It seems like, okay. You had these things. We're not gonna look into it, you know, and mer, you go along. Your way. And then this time, it's totally different. Like, how did you move forward from that?

So I think the the the the immediate, Time period, I I didn't take it well. It was more of 1 of those things of... I didn't take it as serious as I should have. I I just was like, okay. You know, maybe I won't do the cross here, but I also still do things and, like, it's not a big deal. I've lived this long and I'm healthy. And that's not the case at all, you know, because what happened while I did that, you know, I I wound up in the hospital again. I think in January or what it was.

I think it was January. I went up in the hospital, and that doctor was like, and it was in... I was in visiting in Mexico at the time, so I wound up in the hospital in Mexico even. And that same day because I was throwing a blood. They did a... Cat scan on my stomach. I had told the doctor. Well, I didn't tell the doctor I told the nurse, but when they took my rays, he came back in and he goes, you got he they immediately knew. They didn't even... It didn't take them weeks or

anything. That doctor. That doctor was older. So he had much more experience. And because he was a lot older. So I'm sure he's seen a lot more than some of the doctors Was working with here. And from it from the sounds of it. He had been exposed to a lot more and worked in a lot of other areas in the world. So... But he immediately knew. I mean, he told me he goes you have a vast disease, and he was in it's very rare, and I go, yeah. Got it. And he was you shouldn't be cute He

started like you should not be drinking. She should not be partying, she should not be doing not eating he was don't chili. You know, he goes, what's wrong with you and I go, be Well, I I just found out last year and he goes not. And and so he explained to me. So I wound up in the hospital for Hiatus hiatus hernia. Hiatus Hernia. So I had a hernia

on my stomach. And it's funny. I mission that, and I met a nurse later, so that had told me that is was common amongst individual events, and I was like, oh, wow. III would've have never even known that. So that's why how I... I wound the pen hospital Mexico and What happened was son I had the hernia and I threw up the blood, he had explained to me. He was... Your your lighter your blood vessels burst. You had all those... There... Then those are aneurysms. Right? He said

they just burst it. That's what happened. So that makes sense. So at that time, I I start taking stuff serious and I said says, okay. So I I came back from vacation, and I buckled down, and I started going into the doctor and let him know I have the hernia and, you know, we started just focusing on me and just keeping up with my vascular surgeon, and my vascular surgeon. When I had told her about it, she goes, I'm gonna put you on a plan every year, we're gonna do full body scans once

a year for you. So I did that this year and I think March. What it was so Doing around February, March, and she will be doing that from this time forward. Right? So that's where I'm at. Yeah. Did you need any surgery on any of your aneurysms before or have they remained stable? Like, where are your aneurysms and... And what is being done about? I guess is a real question? So all my aneurysms are in my pe area, right now, my my Lil, which is my left 5.

Growing area is actually very large that we're already in talks of surgery on on, mitigating that, whatever it is. They're they're gonna proceed with. I am talking to doctor S. We I actually just sent over my police forms and stuff so they could are signed on my form so they could pull my medical records and and work that out for an initial intake type of interview, so we could see about surgery and stuff like

that. But they're telling me that it's growing at a maybe a centimeter a year, and I had the talks of that with my vascular specialist. So with that, with the last, not this x ray round, but the previous to last year, during the diagnosis round of x rays, she had caught that and said it was pretty large. So she wanted me to go talk to talk to their vascular Kaiser surgical vascular specialist. She's a surgeon too, but she said she didn't feel comfortable taking that type of

project on. So she wanted me to go talk to someone that was more seasoned. Another doctor and maybe more exposure and experience with it. So I went to down, which is an La Kaiser in West La. And I guess that's their specialty cases for Kaiser. And I spoke with him. He took my x rays and he said, you know, the same thing. It's that it's about a 3.6 centimeter meter. He goes for your size. He goes... This is the time we need to talk about surgery and repairing it.

But, you know, unfortunately, after talking with their group, and he their specialty their team, they felt uncomfortable to do the procedure. So before that, this is, I I had already been working with with the Mar Foundation, and I had already reached out to them and and got in touch with the Mar Foundation in Jan and Janet is the 1 that... That gave me all the resources and contacts for vets knowledge. And what whatever knowledge they have. Right? And context, which as much as what what

they could. And she's actually the first person that kind of gave me some type some knowledge and some reassurance, you know, that, you know, being proactive and and keeping on top of everything, you know, you can still live life and it can be enjoyable. There are times and may be a little rough than normal. And and she's like, you know, you're not gonna die tomorrow, which I appreciate it. It kind of... It it really gave me a lot of

relief. She was the first 1. So I had already been talking to the whole hospital And I met with their... In the vascular department, and I met with all of them, all the whole department is by far. I will never forget the department and they're the greatest, everyone in there. So I appreciate him. So I met with doctor Lia and everybody, all the nurses in. That well doctor. Danes is the 1 that that mentioned when I had told him about Eli, or my il artery and the surgery.

And I had... And he... He's the 1 that told me a lot of people... A lot of doctors are probably gonna feel reluctant about working on you. He was... But we do have a surgeon that actually has a lot of exposure and it's seasoned as far as working on doing these type of procedures with... Individuals with vascular diseases. And he goes, she's great, and she has, and she's done Il lax surgeries before if that's the case. And I says, yeah. So we started talking about that.

So this was beef prior to the meeting with him, the the surgeon in Kaiser in West La. Got it. The So I had mentioned to him after he said that I says, well, I know of another vascular surgeon. I don't always say place. But hospital that they're willing to to work I mean, they got knowledge at this. It's called Whole hospital and they've already... I've already spoke with them, and they said they would, you know, take on anything that I need. And he was, you know, he was

understanding. He was very understand very acceptance. You know, he had asked me the doctor's name, and he goes I'll get your referral over there. He goes, that's great to hear. He goes, yeah. If they have... If they have experience with this, and they're willing to do it. In He goes and they know, you know, they they can have an... Success with it. That's great. And I said, yeah, He goes maybe, you know, they can talk with us and we can learn from them.

So I gave him the the doctor's name, and he actually did sent the referral over right away, which I appreciated. And so we hadn't actually moved forward with any of that yet. We kinda just had an initial consultation. I met doctor S at... The s Mar symposium. I think that's what it's called, But is the symposium in Oregon. We met and it was just brief during the

dinner. We didn't get to talk, but, you know, she had said to send all the information over, and she would take a look at it, And so I'm just now getting around to it. So this is where I'm at now. Yeah. As far as that's the only surgery. That I'm I'm looking at you presently, not to say there won't be ending in the future, because, you know, at this time, I'm living with a lot of aneurysms. I think... I think they had said 1 2 every organ, but there...

Not critical. I wanna say. They're just something to look at and then pay attention to in the background. Mh. I always just wanna take a moment to... Shout out pretty much everybody that you just mentioned between doctor S, doctor and Lia yang, meg over

and doctor Lia office. She's been on the podcast before and works with him and has vets herself, you know, and all those people are amazing and jan lynch, Jan, if you're listening to this podcast, you've done an incredible job connecting people and giving them information and you know, making people feel A little more stable, I think is what I heard. Right? Carla just a little more, like, Okay. Take a deep breath. Like,

we're gonna move on from this. We're gonna figure out how to how to make it work? For sure. Definitely a breath of fresh air for sure. Yeah. Jan amazing. All of y'all are amazing. Shout out to All of y'all. I'm so glad that you were connected with Jan and then with David Lia, and then S Cha, like, they're all amazing people. You know, so I met you at that conference in Portland, the Symposium in Portland, What did it feel like meeting at their people with ads?

Bitter sweet. Right? You you don't want anybody. To have this, obviously, this is not fun. But to know that you're not alone and that people have an understanding of, you know, how you feel physically and emotionally. I think the emotional is probably the more important. But you know, It's it's hard to for people to understand, you know, that don't have

this. I'm I'm not saying that other the people don't have other issues, but if they don't, and they don't have this, hard for people to understand the small aches and pains that you live through... That you think is normal, and it's not you know, I didn't realize that me having sharp pains in my stomach or in my side area or my back. I just thought it was normal. I just... I've always shut up and

not complained about it. You know, I just living with the pains is normal, and it's not, you know, Like I said, it's bitter sweet and it was great to meet everybody. I just... Everybody is just so welcoming. And I like to think that a lot of people... A lot of us that do have it. The reason why is because we know there's a lack of knowledge. And we know how tough mentally, it can be if if you don't know what's going on. And you don't understand it. I think that's the bigger issue.

Right, for an individual. Yeah. For sure. And I think, just wanna make sure that we... You know, that after you were diagnosed, like, when we talked before, you said it changes a way that you thought of yourself. Like it changed, like, you had thought you were healthy, like, do you wanna expand on that? Feeling after the diagnosis? Well, the only thing I could say is that there was this brief time period. When I thought that I wouldn't be able to do any. I I thought I building. I was just

broken as a person. Like, my body just physically, like, I'm I'm no good. I'm I'm broken now. Like, what am I gonna do? You know, what what can I do? And that is... That's tough for someone to take on. You know. And the messed the thing is people that have temporary injuries. I'm sure they go through 2 for a short period, but it'll heal and you'll be alright. For us, it's a little more tough because we know that as of right now, there's there's no healing There's only keeping...

There's only preventive maintenance. Right? There's just keeping an eye on it and trying to stay healthy and fight as you can. I it's a good way to put it. We have a lot of research to do to find a treatment. That will prevent us from having to deal with these kinds of things. You know, So you so you were diagnosed with us, and then know, you're doing... You're going through all of this monitoring and figuring out the surgery on this Il and when is that gonna happen

and how... You who is that gonna be with and all that. And taking in, like, all of this information, I think it's been about a year, a little more than a year, maybe since your diagnosis. Right? Yeah. Yeah. So just like rapid change of before and after. And then you go to the symposium and you're meeting people and you're hearing about research? And I'm... Guess, like, what are what are your takeaways from Where we are right now and where we should be. Well,

obviously, we're still at the starting line. Trust. As far as having, you know, a lot of accurate data and put in 1 place, you know, for us to understand and and at and accuracy, you know, and also to be on the same page, I know this symposium, they had mentioned that there's clinical preach, clinical trials that are going on in Europe, are not even in Europe. They're actually past clinical trials and they're already having treatments that

they say are effective. We don't have the data, and we don't have the understanding here because we don't We are not a part of those clinical trials, but it was 1 that... There was 1 that was started before Covid. I know that it stopped. But it has started up again. And when we went to the symposium, they had mentioned that it stopped, and it hadn't... They had knowledge of it. They didn't have knowledge it

started up again. But I had actually just received an email a week prior to the symposium about if I was interested in in being a part of it because they were starting it up already again. So I'm moving forward with that, and it's the clinical trial for I'm not sure if you know, the name it. I don't know the name. That's the 1 for so all. Liberal. That's what it is. So we're gonna... I'm gonna... I'm definitely keeping in

contact with them. I'm moving forward with that to see how that works and if I'm actually gonna get started. I know I've already been approved. Or waiting on my medical records, and I hope, you know, you would look into that maybe consider it and and look into that yourself and all of us, You know, if it's something that if some or 1 of us are willing to do or wanna do, definitely, it's good... You know, something to look into.

I also looked into stem cells, with stem cells being, I wanna say, there's almost no data on it that's actually public or very little data. There is data that, you know, different universities have publications for it. You can research that it does help a lot of autoimmune diseases and and repair organs and joints, but it's not a cure, right, for us. But as far as for me, the research I

was looking into was any... Some type, something that would make me feel comfortable and help me prolong or for go any issues that I would have till I'm older. Right? We wanna live that long and and good quality of life. That's our goal. Right? That's everybody's goal. You wanna live to be old in its best quality of life as you can have. So with stem cells, I was looking to that also, and what I found was I talked to a couple different agencies

that that do offer it... Got offer the treatment even here in the Us here in in Mexico. And, you know, their belief, which... There's not... Again, there's not enough data gathered around for any of this to be true, to be set in stone that is true, but you know, there is data, and it has been compiled, and some of it has been proven just for real life experience, right, in real life cases.

You know, where it there a repair, you know, your pancreas your repairs, you know, people will do this Iv treatments and some of your organs will just be will be well again for... I don't know if it's temporary or permanent, but I know it happens. And also, they believe that it what it does is because when... If you... And, again, you have to have it... They do it in different, I wanna say different ways of giving you the treatment, whether it injection or whether it's Iv.

So their belief is if they give an Iv treatment that the stem cells and the ex xo will flow through the body and even the egg zones as tiny They will go ahead and and get into different areas of your arteries and are the needed areas of your arteries and veins and blood vessels and repair the the weakened walls, basically kind of hold up the structure like a barrier and and strengthen that. Right?

Again, I don't know whether it's temporary or permanent, most likely, it's temporary, But if it's something that can help, temporarily, I'm off for it. Right? Because I go through the pain, and I know what it is. Yeah. That is so interesting. That's like, I haven't really heard of that being used in vascular Eds and I'm...

Interested to read more about it. So, I will, for our listeners, I'll dig up what I can find and put it in the show notes so that, you know, you could check it out if you want to. That's so interesting. And, you know, I think overall, research just... We have so much more to do than where we are right now. What? For sure. Yeah. Were there signs... Like you mentioned earlier the skin tearing from the chalk when you were a kid, were there other signs growing up?

That you now know are associated with vets that you had? Well, I'm not necessarily because III guess I... It was the lack of knowledge of what to look for. I I can tell. They're probably were. I just don't remember. The 1 thing I do remember is about my skin breaking because It was often, and it it lasted, you know, until I was almost the teenager, and it didn't stop. I don't know why it stopped when I was a teenager, but it did...

And, you know, well, also, I I learned to stay away from chalk and try things too. Right? And, like, whatever dried my skin up, I learned to stay away from. But I I just... I can tell you. There's certain things that I noticed now now that I've I've been around all of... I've been around of individuals, other individuals with it, that we have common... We have things that are in common, maybe, like, like my smaller mouth.

I I always thought that was normal because of my dad, but, you know you're look at my brother and my sister, they don't. We do look alike like the upper face, but not the bottom. Right? And they were talking about this symposium about mouth shape and the top in the butt and the top arch or whatever. And I noticed that's common between us. Some of us have that, facial facial feature facial features. They're just slight, but if you really, really notice my, that they're there.

But other than that growing up, no. You know, I I just I couldn't tell you because I I didn't know... I wouldn't I know what to look for at that time. And it's so far back. I I don't remember it. Yeah. Do you have any advice for someone going through? Either what's... You're going through now or something that you've been through related to your med diagnosis? Yes. Pay attention to your health. Pay attention to the littlest thing. It doesn't matter what it is.

If you're young, you can probably get away with it, but as you get older, if you feel something's not right, it doesn't matter if you feel like it's a waste of time or if you don't believe it, get check, get a checkup up, you know, make sure... And then doctors are people too, even though I've met some that are some of the most brilliant people that I've ever met in my life, to be human is to error. Right? You know, they you you gotta... You also... If

you feel like something right, speak up. Let him know, hey, Maybe you should look into more... Into that more for me, please, because I don't understand it, and I don't know what it is. And if you say it's there, and it's... And you don't know if it's sears, or not, maybe it is serious so we need to look into it. Speak up. Also, if you do have it and you don't know where to look or don't know who to

talk to Marvin Foundation. Please call them, get in touch with the resources, reach out to your local resource hospital. I'm sure they have a a Facebook page. I'm sure they have a group that they get together and they hang out, you know, like like us. We have a group chat. Like, we've talked we've met. I'm sure they have that that way, you don't feel alone and that way, you can also gain some more knowledge. And accurate knowledge because of what out there...

What's out there on the Internet is really old data. There's very little that's updated. I should say most of it is old data. So what you're gonna find may not be as accurate as as what what it is it... What it is now. And it may not be as scary, it may enlighten you and and put a positive spin on on this and in your life. That's great advice. I'll put Also, I'll put links in the episode show notes for the foundation and the support groups and things like that too. That's wonderful advice.

For the medical professionals listening or the medical students listening. Is there anything about your experience living with ads or just in general about ads that you want them to know? I'm not I'm not sure. I have the I'm not sure I I have the capacity or or the expert the knowledge to even give them an advice or tell them, you know, Yeah. What it could... What could they do or what couldn't they do better? You know, I think what they're limited to.

They are doing what they can. You know, I I know we we have those those 3 regions that are working hard, I I guess. Right, as far as to find out information and and pull stuff together. Right? I I think it's Oregon State University, John Hopkins and in Texas, I believe too. Yeah. To my understanding. Yeah. Baylor and I get the Ut and Baylor are the same thing, and there's also the university of Washington.

But yeah. Those are the... I think those are probably the main regions or some doctors over at in New York that are pretty familiar. There's mayo clinic in Rochester. There's a lot of different hospitals now where we have people who are knowledgeable about vets and Mar and Illinois states, But I think the major research is as you mentioned coming from, like, 3 or 4 areas plus Europe. Yeah. I guess the only question I have is with all the updated technology and I'm an It with Ai,

Like, where are we at with that? Know, and and implementing that in a strategy using Ai and and helping as far as speed up, you process speed up, gathering the data speed up, the quest... The answers to the questions that and the solutions that we have, you know, where are we with integrating that technology. And I actually asked that the symposium. I asked 1 of the doctors, and, you know, she had laughed yeah. That's the hot topic right now. She goes, but, you know, we're... We... We...

We don't get and we haven't, but it's being talked about. And I'm like, why are we talking about this because I know there's other, I wanna say issues it is being used for in the medical field because it is being used in the medical field. Right? I

mean, it has to be. I don't have that type of exposure to it to know for sure for certain, but I know it has to be with all the new stuff they talk about as far as how they've sped up with Covid treatments, with other treatments, they've gone down from 10 years to 3 to 5 years from finding answers to solutions and even speeding up pro progress with speeding up approvals. Right? So why is that not being used for rare genetic diseases? And this itself that's I guess, I I have that question.

So I guess that's the only thing I I would ask are our health professionals is where are we with that? And how can we how can we help? Or how can we... Implement that to help speed stuff speed up these answers to these solutions. Yeah. I think that's a great that's a great thought to kinda leave with the medical professionals listening and the medical students and the researchers listening. I think it's a great thought. You know, both, you know, why aren't we doing this?

How do we do this? Is this applicable? To our research and beds and how as, you know, someone with vets, like, how can someone with vets help this process, help this research, help make sure that progress is moving forward. Right? I think those are great thoughts to leave the medical professionals and researchers with good thoughts. Well, thank you so much for coming on and sharing your story.

Especially so soon after diagnosis, you know, I know it's been about a year, but in the grand scheme of things, like, I know, a year is not very long to be living with this knowledge about beds and, you know, figuring it all out out and meeting people for the first time doing everything that you're doing now. They can be overwhelming. And I really, really appreciate you coming on to share your story out Well, Thank you. I mean, I appreciate you allowing Me, be on here and and

tell it. I'm glad I could I could do this. I I never would've have thought even thought about it or even had the courage. And for you to invite me and and kinda hold my hand through the entire process and to do this. It's really cool. I appreciate it. Yeah. Of course. If you're listening in you're newly diagnosed and you're trying to find resources, As I said, there's gonna be lots resources down in the bottom.

But thanks again, Carlos, and I'll be wishing the best for you for your upcoming to be determined date of your Il. Procedure and all of that. For sure. Thank you. Thanks for listening to this episode featuring Carlos Horn, sharing his story with vets. If you're ready to meet others, get involved or need support, there are links for you in the episode show notes, as well as information on how to sign up for the Fed's collaborative. A research study for people with beds, mar, and lo Dee.

If you like this show, be sure to share it on social media or even better, give it a rating or review. You can also support the production of this podcast by joining my Patreon, or by buying merch. As always, my top tier patrons are listed in the episode show notes. If you wanna be on the next season of the show, there's a link in the episode show notes to get on the pre interview calendar, and I'll be starting the interview process for next season

in September. In the next episode, we'll be talking to Aaron Lang about her story with a Us. See you soon. We